The BIG 3-0: the birthday report

"Hope is the thing with feathers that perches in the soul and sings the tune without words and never stops at all." --Emily Dickinson--

I asked for a framed print of this quote for my birthday. Our neighbor made it for me and it is GORGEOUS! If I can figure out how to use my NEW digital camera, I'll try to take a picture of it and post it on the blog!

As many of you know, I was having a very hard time with the upcoming big 3-0--not because I was upset about not being married or not having kids, but because I was upset at the prospect of thinking about starting off another decade so sick. I never imagined that I would still be sick this many years later--and in some ways sicker than I was seven years ago. I felt completely overwhelmed and was dreading my birthday...

So, instead I picked this quote by Emily Dickinson and asked for that as my birthday gift. And, I made the butterfly my new 'symbol' of hope. I am trying to turn it around that this is going to be my decade of HEALING. Let's hope...

I ended up having a beautiful birthday. I felt incredibly loved, which made it absolutely wonderful. I still felt lousy all day and especially all week afterwards--so, I didn't get the 'pain-free yuck-free day' that I was hoping for. I think a free pass on birthdays from feeling sick is in order...

First, on Saturday, a high school friend came over to have lunch with me. I sat in my recliner and we ate lunch together. I am finally learning to let go of trying to be a 'hostess with the mostess' when I am so sick...and I just focus on trying to spend time with visitors. Sarah packed her own lunch, did my lunch dishes and came over on my schedule! She started my birthday weekend off with a card and a BUTTERFLY Sculpy. I am so grateful for my friends accommodating to my schedule and needs, just so that we can be together. After about an hour,

I'm toally wiped for the day...so that was Saturday.

On Sunday, my mom cooked birthday dinner, since she had to work all day Monday. The menu included shrimp cocktail, hake, fresh beets, fresh corn...and BIRTHDAY CAKE! Yes, we found a company that makes gluten-free, dairy-free cake blanks. So, for those of you who know me...you know how much I always loved yellow cake with chocolate frosting! I got to have this for my birthday! It was sooo yummy--the first cake I have had in years!

Since there was no mail on Sunday or on my birthday because of Columbus Day...I saved all of my packages and cards that I had received throughout the previous week! So, after dinner I opened my packages...the funkiest, coolest stationary from my Cousin Day (with hopes that I will soon be back to doing one of my favorite things--writing snail mail). A book on cd and new jazz cd from my Uncle Stan. The book: Friends, Lovers and Chocolate...sounds good already, doesn't it? I also got a package in the mail from the Netherlands! A woman I met on my support group sent me a beautiful bracelet which I wear all of the time now as a symbol of our friendship--we're POTSPals, as I like to say.

All this excitement happened before I even turned 30 on Monday!

Sunday night, I could not fall asleep (nothing new for me, of course...) and at 1 am I logged on to my computer to my support group. And here was a post from one of my friends there wishing me happy birthday...she posted it just a few minutes before I logged on! People on my forum have continued to hold me up and support me in amazing ways...one sent e-card the whole week preceding my birthday, another found my address and surprised me with a card and letter.

On Monday, I tried to pace myself to save energy for dinner with Dad and Abbie. I spent the afternoon opening cards from everyone. THANK YOU ALL for all of the beautiful cards you sent! I have them up all over the place so that I can look at them. Your sentiments and great cards were just what I needed to make my birthday perfect. I also got to talk to Ang, Ted and Carrie...and answer the door only to find a delivery of two bouquets of flowers! I was so surprised! One bouquet ALL pinks and purples! And one of cheery daisies. Thank you Marla and Carrie! I couldn't believe that two of my senior year roommates both sent flowers, and from the same flower shop no less! It was a riot! I petered out and missed your calls...Hill, Sarah and Loralea. Loralea wins the prize for her singing of course! :) And hip-hip hooray for Ted because he learned my birthday isn't on November 2!

Dad and Abbie came over here to cook dinner. We had filet mignon! Let's just say, I ate well the whole weekend. I wish my health would follow my good appetite! Dad and Abbie went so far above and beyond to make my birthday special...I was really overwhelmed. They cooked dinner here, we opened presents...and I petered out. So, we had cake in my bedroom! Abbie sang the melody and Dad harmonized (attempted to) on Happy Birthday--wish I had the audio of that to post! We finished the evening with one of Abbie's pampering foot rubs. Yup, I'm spoiled. My big present was a digital camera--which I am so excited about...however I still need to learn how to use it. When I do, though, look out...b/c you'll be getting emailed pics in addition to my verbose mass emails!

I felt like the I got to celebrate my birthday all week because the mail just kept coming...THANK YOU to Dad's family for the shower of cards and gifts and phone calls. I was completely overwhelmed. And to Aunt Joan for the beautiful heart to Aunt Jeanette for the package of yummy smelling things and to Aunt Pat for the surprise phone call...And to all of my friends who showered me with love and cards too! Many of you picked such gorgeous, perfect cards and wrote such great notes...

With all of the love and blessings coming my way this week, I guess turning 30 wasn't so bad after all. Thank you so much for helping me to start this new decade off in a positive way. Now, I just wish my health would follow all the positive vibes you all are sending. To those of you I have yet to get an email out to thank you, I'm sooo sorry...this week has been another rough one in the health department. So, I wanted to update my blog to let you all know 'I'm here...just not too perky!'

I wanted to write this blog to let you all know how much you sustain me and touch my life...all of the love you continue to give me is amazing. I am really hoping that this is going to be the decade for healing...

Blessings and MANY thanks for making my birthday beautiful...

Emily

Why Lyme?: A few "God moments"

Many of you have been asking Why Lyme Disease? Why is this a possibility?

Given my level of neurological symptoms, as well as my not-so-great response so far to treatments, my POTS doctor and I are looking further into both Lyme and Cervical Stenosis.

On the path to deciding whether or not to pursue the possibility of a Lyme diagnosis, I found myself amazed at all of the "God moments" I was having...and wanted to share those with you. If "God talk" bothers you or makes you uncomfortable, I completely understand...so just skip this post on the blog!

As my 30th birthday neared, I found myself despairing about what my life would be. It made me think about HOW sick I have been this past year, how I've gotten worse, not better. I began to wonder more: Would I ever feel better? Was this my life? Would I ever be able to live independently? What about marriage? Children? And everything seemed impossible.

I swore I would never get 'down' about turning 30. But I did. I never imagined that I would enter another decade of my life sick. I had somewhat accepted 'losing my 20's', but I couldn't imagine starting off another decade so sick.

I was also feeling like we were running out of options and strategies for getting me back on track (although, I know in my mind I dramatized this b/c my POTS doc never gives up on me, and never stops pulling tricks out of his hat!). I have tried several new medicines and so far, we haven't had much success. In PT, we have been unable to make progress. So, I felt 'stuck'.

What I wanted most was for God to show me some new hope before I turned 30. Some new hope that just maybe, just maybe my 30's could be my years to improve and have more healing.
I took my despair and really dialogued with my PCP and my POTS doc (as you know from the earlier post). I cried to my PCP! He is such an angel!

As I questioned whether or not to pursue the possiblity of Lyme, I had one "God moment" after another. Here they are...and here is why I feel so incredibly called to pursue the possibility of Lyme. Whether I have it or not, I must pursue this.

• First, about a year ago I began corresponding with a woman on my support group who herself had Lyme disease. She had a daughter my age with POTS. We began corresponding, growing closer and closer, sharing stories, and favorite books on tape. We would often email each other and without knowing, be listening to the EXACT same book on tape at the EXACT same time. I felt so drawn to her, but we rarely talked about Lyme.
• In the spring, my POTS doc raised the remote possibility of Lyme, just to rule it out. I knew nothing about Lyme. But, immediately I KNEW that God had brought this woman in my life for even more reasons! I knew one person in the world with Lyme, and it was her.
• My friend and I began to correspond in great detail about her experiences with Lyme and as an advocate for Lyme. She is AMAZINGLY informed and passionate about Lyme, and I have so many emails from her about Lyme. As she told me her story, we often had very similar experiences--especially not being able to sleep!
• My mom went to dinner with some friends shortly after the suggestion of Lyme disease, and the wife said, "I have always wondered if Emily had Lyme disease!" We had never thought of it before!
• Recently, I posted on my website about how down I was feeling. Another woman, who has both POTS and Lyme emailed me personally to say how much I reminded her of herself and her Lyme experiences. She said that she did not want to push me on the Lyme issue, but offered both her expertise and friendship. We began corresponding in great detail about Lyme and her experiences and I felt so similar to her. She offered to do ANYTHING to help me find a Lyme Literate MD (a VERY difficult thing to do and decide about). Between her and the other woman from my site, I felt so incredibly blessed--although we have never met, these two women did so much to help me with this process. I literally could not have done it without them. And I continue to be amazed by their kindness and support. I felt God through them.
• Just after I began emailing more about Lyme with these women, I saw my PCP and asked him for his thoughts on pursuing the Lyme diagnosis. He was open to it. And then said, "I just had a man in here today who has been sick for four years and they just found out he had Lyme disease."
• When I arrived home from the doctor that day, I found a letter in the mailbox from a dear college friend. After dinner, I read the letter only to find my friend mention that her Dad had recently had a major health scare due to an allergic reaction to antibiotic treatment: He had been diagnosed with Lyme disease! I felt like God was hitting me over the head with Lyme disease! I hadn't heard of it hardly at all...and then all in the course of a few days, I was hearing about it in what seemed like everywhere!
• My PCP appt. was on a Thursday. On Friday, Mom took Asher to the vet for an appt. The vet asked what was going on with me health-wise. At first, my Mom did not mention the Lyme disease stuff, but then thought, 'Oh, I should ask b/c he sees this in animals too, and might know something.' She told him and he said that both his son and his lady friend had Lyme disease! His son had been very sick and was now in medical school. He even had an LLMD for us to possibly see. I ended up scheduling an appt. with the doctor, but ultimately choosing a different doctor.
• Friday evening, I called my friend/adopted Grandma. She asked how my doctor appt. had been the previous day and what we had decided to do. I said, "Well, we are going to look into Lyme disease and..." She interrupted and said, 'You're kidding? I just said to my husband the other day, 'I wonder if Emily has ever been tested for Lyme disease?'" She wanted to suggest it to me, but her husband didn't want her to 'interfere'. She began to tell me the story the daughter (who I know from high school) of their close friends who was diagnosed for many years with bi-polar disorder. Then, a local doc decided to check her for Lyme disease just a short time ago. She came back positive for Lyme, and since beginning treatment has had a great deal of improvment. Her psychiatric problems were CAUSED by the Lyme disease!
• During this time, more and more people on my support group were also popping up with Lyme and POTS, and yet another woman emailed me about having Lyme and POTS.

These are what I call "God moments."

I felt that Lyme was popping up everywhere! I felt that I must pursue it as a possibility. I felt that for the first time in a long time there was new hope and new possibility.

Whether I have Lyme or not...it doesn't really matter. I just need to pursue the possibility.

Right now my quality of life is so poor, I do not want to live my life this way...so I must leave no stone unturned!

Before the Lyme 'stuff' began, I ordered a painting of a butterfly from another woman on my support group. She painted me another one--and titled it 'Butterfly of Hope.' At this point, I wasn't feeling very hopeful, but I made an intentional effort to turn around my thinking and made the butterfly my new 'symbol' for my 30th birthday. I also asked for a print of a favorite Emily Dickinson quote about hope for my birthday (which our neighbor is making for me!).

I feel that God has guided me on this path every step of the way...and that I was given the gift I soooo wanted for my 30th birthday. New hope, new possibilites.

Regardless of what we find--Lyme, cervical stenosis--the path will not be easy--but it is an answer and it does give us more of a direction to travel in terms of treatment.

So, for those of you who have been asking me about my "God moments"--here they are!

Now, I'm just hoping we are going to figure out how to GET me to this appt! That will be the next challenge!

Love and Blessings,

Emily

Strictly Medical--The Latest Scoop

As most of you know this past week has been mostly consumed with medical stuff, so for those of you who like the 'medical scoop,' here it is.

A week ago Friday, I went in for IV fluids (which can sometimes help relieve symptoms of POTS by increasing fluid volume, increasing blood pressure, and decreasing tachycardia). I had a charming nurse (NOT!) who lectured me on how great my life is, how 'young and healthy' I am, how hard I need to try to get better, and how it's all 90% attitude. I was so weak I really couldn't argue with her, I just told her I didn't really need a lecture. Like I WANT to be this sick! I wanted to say, "If I could have willed myself to be better, I would have been better a long time ago!" How come we always think of comebacks after the fact? Sorry, a little vent there.

Anyways, I could not get an appt. with my PCP, but when his nurse came up to see me in the IV room, she said, 'Oh Emily, you look awful.' Gee thanks! My PCP had been called to the hospital to admit a patient, so the nurse ended up sending us to the ER for another bag of fluids and to see my PCP at the hospital. As always, he was wonderful and compassionate, but it is so hard because he feels so helpless and doesn't know what to do for me.

I had been taking a medication called Topamax (or Dopamax--our slang name b/c it makes you so dopey!) and he suggested that possibly, given my extreme sensitivities to meds, this was wreaking havoc with my Autonomic Nervous System. So we decided to stop that med, and wait out the weekend.

I went back in for a 'sick visit' appt. on Monday morning. We did another round of IVs and strategized for my next regularly scheduled maintenance visit on Thursday.

In between these appts. I saw my PT who has seen weekly the fact that I have become weaker and more miserable. While she was here we paged my POTS doc and spoke with him for a few minutes. He has been on ward service for a month, so we couldn't talk long, but it helped my PT to feel a little better as we have not been able to make progress at all in the PT plan to help with the cervical stenosis.

Thursday was the BIG appt. that helped me the most to come up with a starting plan for the next few months. I had a 45 minute appt. with my PCP, at the end of which he held my hand and said 'Take care, my friend.' I am soooo grateful to have him in my court. Although he has little knowledge of Autonomic Disorders, I am unlikely to find ANYone in this town who does. He admits that he has never seen anyone like me. I always knew I was 'special' but this wasn't quite the way I had hoped! Being a medical marvel is not fun!

Anyways, while I was at my appt. he paged my POTS doc and they helped come up with some things to pursue:

1. Rule in or out the possibility of Lyme Disease. Seek out a Lyme Literate Doctor and see if this is causing/contributing to my POTS. This will mean traveling.


2. See a neurosurgeon who comes to our town from a larger hospital to evaluate my cervical spinal stenosis. See if he has any experience with Autonomic Nervous System disorders.


3. Try a new anti-depressant to see if it helps more with symptoms and my increasingly 'blah' mood from this extra-tough time. The one I am on may be contributing to my insomnia. This newer one has also helped a lot of patients with fibromyalgia--so that might be helpful to me also.


4. Email with POTS doc after he is done with ward service and things settle down for him!


5. Give the Topamax a little time to get out of my system to see if I feel a bit better. ( The fact that I can even type this post is a BIG change) but I still am incredibly weak and feeling lousy.


6. Best guess is still that the intubation and subsequent positioning of my neck during GB surgery set off a major reaction with my neck.

This game plan helps me to feel like I am being as pro-active as I possibly can be. At this point, my quality of life is very low, and I am so much worse in year 7 of this illness than I have been yet. So, I want to rule these things in or out. I am so scared of it getting worse. And I want to make sure we aren't missing something. I have such super medical care and feel that I am being held in the most caring hands and and helped by brilliant minds. This gives me a great deal of peace, b/c previously I felt that no one was really paying attention and I wasn't taken seriously. I now have a superb team of PT, POTS doc, and PCP.

So that is the plan, I will keep you posted on upcoming medical appointments, etc.

I am feeling just a teeny bit better off of the Topamax, but am still very weak. I need help with most everything, as my standing time is virtually non-existent!

As for sleep? I'm not quite so sleepless! I went back on Ambien after all of that! And started Magnesium, which helps sooo much it is amazing. I still wake up feeling like I haven't slept at all?I feel like a wet dishrag (as my Grandma would say) and long for mental clarity. But it sure beats being up all night!

As always, thank you for your AMAZING SUPPORT AND LOVE through this. I continue to be overwhelmed by your kindness.

Love and Blessings,
Emily

Still Sleepless...

Thanks to all of you who have read my blog!

I am finally posting a new update...

Not much to report...I'm STILL NOT SLEEPING. I may soon lose my sanity!

After 3 weeks of literally NO sleep EVERY night, I decided to call my PCP and tried the new med on the market for sleep, Lunesta. I got a wee bit of sleep last night--better than it has been. But, I still have yet to sleep more than 2 hours in a stretch. I guess I have some sleep problems, b/c by this point the previous sleep med and subsequent withdrawal symptoms should be over with! UGH! My POTS doc is back in town next week, so I will be in touch with him to see what we might try next. In the meantime, I couldn't take another night of pain and BBC World News and seeing the clock every hour!

Needless to say, I haven't had energy for anything..but I am listening to a 'fun fluff' book on tape right now, Lucia, Lucia which I am enjoying. I have a whole stack of books waiting to be listened to...it's so hard to decide which one to start next!

I will try to keep my blog updated more frequently, especially during times that I am even more unable to keep in touch.

That's the news for now. As always your emails always lift my spirits! Oh, the joy of 'New Mail' from those we love in our inbox!

Love and Blessings, Emily

First Blogs, First Haircuts...

After waiting more than 7 months for a haircut...I finally got a WONDERFUL haircut this week from my Iowa Aunt Jeanette! I feel so much better...I cannot believe how a haircut can lift the spirits. One of my first haircuts was done by Aunt Jeanette...so this took us down memory lane! I haven't been able to go get a haircut since before my gallbladder surgery, so this was a milestone on the road to recovery!

I have not been to Iowa to visit my relatives for over seven years. This week we were blessed by the arrival of a 'car full of Iowans'--my Aunt Jeanette, Uncle Howdy, Aunt Jean and Uncle Don! I asked Uncle Howdy to bring a baby pig and a helping of Iowa farm smell, but he didn't!

I have been taken a new medication to help control the pain and nerve stimulation in my neck. I have had less pain and more clarity and energy than I have had in months. It's amazing...and I'm keeping my fingers crossed as I get ready to start another new med on Monday.

While my relatives were here, I had the best few days that I have had in a VERY LONG time. It was amazing and such a blessing. I was able to enjoy their visit, while lounging in my recliner...with only a low level of pain and other symptoms. I'm still overwhelmed by how much energy I had and how much I was able to enjoy their visit...it was a much needed break.

The week was off to a rough start...with an ER visit, which my doctor kidded me could be an 'attempt to sabotage the family gathering'! I had the smoothest ER visit a girl could ask for...and even had our neighbor as my ER doctor! Luckily with IV fluids, two days of rest and lots of Jewish chicken soup I was up for company. My Aunt Jeanette said to Uncle Howdy, "I'm not leaving until I get to see Emily!" So, he was grateful that I started to feel better quickly! You can't take him away from the farm for too long!

I am just feeling so grateful for the 'good days' that I had, a fresh new haircut, LOTS of Iowa hugs, and lots of catching up with everyone. I cannot believe that they all made the journey to see me! Catching up and re-connecting was wonderful...

Welcome to my new little space on the Internet!

Later alligators!

Emily